Counterproductive beliefs held by mental illness advocates

by D.J. Jaffe

During the many years I have been advocating on behalf of people with neurobiological disorders (serious mental illness) I have heard many politically correct thoughts accepted by almost all advocates around the country, which I do not believe to be true.

Following are 11 false beliefs (delusions if you will) that have permeated the movement to improve care for seriously mentally ill people that have gotten in the way of meaningful reform.

Delusion #1: There is stigma to being ‘mentally ill’

Reality: As Jean Little pointed out, there is no stigma to having a neurobiological disorder, the same way there is no stigma to being African-American or HIV positive or tall, short, inny or outy. There is however discrimination.

Cure: Stop talking about stigma. Start talking about discrimination. When you see discrimination, complain to the discriminator (not about stigma).

Delusion #2: The media sensationalizes mental illnesses

Reality: The media rarely portrays individuals with schizophrenia as successful accomplished individuals because individuals with schizophrenia rarely end up as successful accomplished individuals. This is especially true outside the mental health and arts fields.

Cure: Rather than criticizing the media when they report on violence, help them. Use the media interest in violence, homelessness, etc. to propose our solutions.

Delusion #3: It’s important for us to be on boards

Reality: It is important for us to improve the quality of care for individuals with neurobiological disorders (NBD, formerly known as mental illness). Too many advocates confuse “access” (being on the board) with “progress” (improving conditions). Just because we are at the table does not mean we are making progress.

Cure: Hold those who are on boards and positions of authority accountable for their actions. Criticize from the outside, rather than get co-opted from the inside.

Delusion #4: Community Reinvestment is good

Reality: Closing state hospitals and reinvesting the money in community based services sounds nice, but rarely works. The hospitals get closed but the money does not get reinvested in the community. We trade real services for real promises and make a real mistake. In addition, every state needs more hospitals rather than fewer.

Cure: Oppose the closing of state hospitals and support improving care at them.

Delusion #5: Radical Consumer movements are all wrong

Reality: The majority of state hospitals, institutions, etc., community based programs are a disaster. The sicker you are, the less they want you. They absolve themselves of responsibility by continually shifting you from one program to another until you go away. Or they declare you ‘cured’. They have doctors who don’t understand giving you medicines they don’t explain. Unfortunately, putting people in the abysmal mental health system is still better than letting them become part of the atrocious prison or shelter systems.

Cure: Recognize that consumers who rally against the medical model are wrong. Those who rally against the system are being honest. We have to work together to improve conditions.

Delusion #6: The family knows best

Reality: Because some families tend to educate themselves and care intensely, we fail to recognize that we may still do the wrong thing. There does exist families that are uneducated and/or uncaring. They abuse rather than help their family members.

Cure: Make sure consumers who have been abused by families feel welcome. Maintain independent judicial and/or administrative review of decisions that are being made for consumers who have been deemed ‘incompetent’. Start funding lawyers who will advocate in the consumers ‘best interests’.

Delusion #7: People with serious mental illness are no more violent than others.

Reality: People with serious mental illness as a group, are not more violent than others, unless they have a past history of violence. Studies that ‘prove’ people with neurobiological disorders (NBD) are not more violent do so through two statistical slights of hand: (1) they combine a study of the ‘worried well’ with the ‘seriously ill’ to create an artificially low violence statistic. If only the seriously ill were studied, the violence figures would be much higher. (2) They limit the study to seriously ill people coming out of hospitals thereby eliminating people who are jailed, killed, suicided, in shelters, or homeless. Again, the effect is to create artificially low violence statistics.

Cure: Support pharmacological research and community programs aimed at cutting down on the violence. Change involuntary inpatient and outpatient laws so people can get help before they become “danger to self or others” rather than forcing them to wait until after. Improve the quality of programs so consumers want to get into them, rather than escape from them.

Delusion #8: Parity for mental illness is cheap

Reality: 25% of all hospital beds are occupied by people with NBD. $5 Billion is spent on schizophrenia alone. Insurance is expensive.

Cure: Rather than arguing that coverage is cheap, argue that the issue is discrimination. If insurance companies really want to cut costs, they would make caps, co-payments, length of stay limits, etc. apply to everyone. Instead, they discriminate. Show how this insurance company discrimination is foisting the cost of medical care for these individuals on the public purse. The federal government, through Medicaid (IMD Exclusion) remains the largest discriminator targeting people with mental illness.

Delusion #9: Research is good.

Reality: A lot of mental illness research is wasted on stupid idiotic research that won’t help a single person with a serious NBD. Instead, it focuses on the worried-well. The benefits of research at Psychiatric Institute in New York, never reaches the people who need it. For example, they research electro-convulsive therapy, but people in New York State hospitals can’t get this treatment. The research is little more than an intellectual exercise.

Cure: Support research done by NARSAD, IMHRO, and the Stanley Foundation. Stop states from funding research unless they promise to make the benefits of the research available to its citizens.

Delusion #10: The American Psychiatric Association is on our side

Reality: Psychiatrists provide an important service. But the APA is the union for psychiatrists. And like any union, their job is to protect the interests of and create jobs for their members. They have come up with a manual (DSM) that allows them to label 40+% of the population “mentally ill”, because then they can get reimbursed for treating all those people. It creates jobs. But it also takes research and treatment dollars that should go to the most ill, and diverts it to those less in need. They claim anything else is discrimination by diagnosis and have opposed all actions that help only the most ill.
Cure: Lead, rather than follow the APA. Partner when the interests are common and seperate when they are not.

Delusion #11: The pharmaceutical industry is on our side

Pharmaceutical companies have invented medicines that have helped many. But they are interested in profits only. They invent diseases and then medicines to ‘treat’ them. They refuse to allow the importation of medicines from Canada which would make them cheaper to Americans. They regularly game the patent system to see that their medications remain as costly as possible.

Delusion 11: Consumers should control the mental health system
There is no doubt that people who have been recipient of mental health services can identify with peers. But do the high-functioning consumers who populate mental health boards and start-up programs have aninterest in helping homeless, psychotic individuals with florid symptoms? They do seem to be interested in getting funding for their own programs and workshops. Peer counseling has sometimes created a two-tier system where the peer counselor is the master and the program enrollee the lower class. Peer counselors should meet the same training requirements as others. There should be no dimunition in qualifications of people who get paid to help those with mental illness.
Hope these thoughts get us thinking.

DJ Jaffe is Executive Director of the non-partisan Mental Illness Policy Org., and author of Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. He is a critic of the mental health industry for ignoring the seriously ill, and has been advocating for better treatment for individuals with serious mental illness for over 30 years. He has written op-eds on the intersection of mental health and criminal justice policy for the New York Times, Wall St. Journal and the Washington Post. New York Magazine has credited him with being the driving force behind the passage of New York’s Kendra’s Law and Congress incorporated ideas proposed by DJ in the Helping Families in Mental Health Crisis Act.